For Feeding Tubes

You can almost call me an advocate for feeding tubes.  While I do not want any child to have a feeding tube, it truly can make a dramatic difference.   In the past week, I have talked with a couple of families about feeding tubes and it got me thinking...

When Brayden was about 9 months old, we were in midst of a battle for him to eat by mouth.  Brayden was only able to nurse (6-8 times a day for at least 45 minutes, it felt like I was nursing all day and night and I could barely do anything else because there was no time...but I digress).  On good days, we could get a tablespoon of baby food in him.  We went to feeding therapy for many months.  We tried all kinds of feeding methods, all different tastes and textures, all different positions for him to sit, etc.  We even considered going to a feeding boot camp, an intensive program that was a full week of feeding therapy...we did not go because we needed to be here for Carter and Luke.

By about one year, Brayden was not making any progress with eating and his weight was becoming a concern.  I dreaded, I mean dreaded, hated, loathed, the idea of Brayden getting a feeding tube.  It felt like we were crossing over into a deeper, more special needs category, that I was not ready to handle...thinking, "feeding tubes are for those really medically fragile children"...that is not Brayden.

We talked with a few of Brayden's doctors and meet with the surgeon.  Brayden was then scheduled for his first feeding tube surgery when he was about 13 months old.

Brayden had the surgery, everything went pretty smoothly.  He had his first g-tube.  We were sent home with all of the gear and that started our monthly delivery of medical supplies to the house.

Of any tube to be coming out of one's body, a feeding tube must be one of the easiest.  It is not like an IV or central line.  The stomach is a lot tougher than those little veins.  The tube comes out and we have learned to put it back in at home.

As time passed I realized the benefits that do come along with a feeding tube:

• Very important:  These kiddos handle so much just getting through the day.  They need all their strength, which is what food helps provide.
• All of the health problems that come with lack of nutrition can potentially be diminished with the help of a feeding tube.  Malnourished is not pretty...Brayden's bones were pointing out, loosing hair, muscle to help hold him straight, poor sleep, grouchy, possibly bone problems, etc.
• You know the calories/intake.  No more force feeding (or adding those calorie booster ingredients) just to make sure they get some nutrition.
• They can still enjoy food even on the feeding tube.  Nutrition from the feeding tube.  Everything else by mouth is a bonus!  Eating does not have to be a battle.  They can learn to enjoy it.  Eating can be delightful when someone is not stressed out and forcing a spoon in your mouth.
• Hydrated, flushing fluids right into the tube.  We could not get Brayden to take liquids.
• Medications!  This is an ultimate bonus in our house.  Medications slide right down that tube.  Before the tube, we would have to place the syringe in the back corner of Brayden's mouth, slowly push out the medications and close mouth...trying to make sure it all went it.  What to do about those seizure medications that come rolling out his mouth, wondering how much went in, do we give him more, etc?
• Peace of mind, as a parent you know that your child is getting nutrition.  A side note - many parents do a blended diet if you do not want to only do formulas.

Brayden does have a g-tube and a j-tube.  Not because of tube problems, we learned over time that Brayden's GI system is not always working properly.

Feeding tubes get support from me (still would rather not have one but it certainly helps).